Tag Archives: representation of eating disorders

Diagnosing Anorexia Nervosa VS EDNOS: What Does the Weight Criteria Really Mean?

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Making a distinction between EDNOS and Anorexia Nervosa is a tricky one when it comes down to the Atypical Anorexia Nervosa (a type of EDNOS) side of things. There are those that adhere to the strict weight criteria for the diagnosis of Anorexia Nervosa (even though there is now no specific cut off point in the DSM-V), and there are those that use it as a guideline. The argument on whether or not a specfic weight is required or not for the diagnosis of Anorexia Nervosa is rife across the eating disorder communities, so I decided to do some research on what the medical community has to say on the matter.

According to the DSM-5 criteria, to be diagnosed as having Anorexia Nervosa a person should display:

  • Persistent restriction of energy intake leading to significantly low body weight (in context of what is minimally expected for age, sex, developmental trajectory, and physical health) .
  • Either an intense fear of gaining weight or of becoming fat, or persistent behaviour that interferes with weight gain (even though significantly low weight).
  • Disturbance in the way one’s body weight or shape is experienced, undue influence of body shape and weight on self-evaluation, or persistent lack of recognition of the seriousness of the current low body weight.

The Subtypes of Anorexia Nervosa are: restricting type, and binge-eating/purging type.

(I should also first mention that the DSM-V has already been widely criticised, and The National Institute of Mental Health withdrew their support for the manual, stating that “patients with mental disorders deserve better.”  Another thing to consider is that the cut off point for what is a healthy BMI varies from medical institution to medical institution. Many use 18.5 as the cut off point. Others use 19. My pharmacist had a chart on the wall that stated that a normal BMI was between 20 and 25 (it also states that here). So that already can create problems when there is no consensus between medical communities on what is underweight. You can go to one doctor’s surgery and be told you are underweight and another where you are told you are not. Really, we should just be going on each personal individually, and using these charts as a guide.)

To start with, Kate Donovan wrote “Problems in the way we diagnose anorexia” – a blog post exploring the weight criteria when we still had the DSM-IV – which is relevant because Anorexia Nervosa is still being diagnosed using an outdated weight criteria.

The reason this is so important is that Atypical Anorexia Nervosa and Anorexia Nervosa are barely distinguishable – so why are there two different diagnosis’s dividing the two when they are the same disease and both require extremely similar treatment which only differs in terms of the individual rather than the label? Results of Jennifer Thomas’s study (The relationship between EDNOS and officially recognized eating disorders: meta-analysis and implications for DSM) indicated that EDNOS did not differ significantly from AN on eating pathology or general psychopathology, and “moderator analyses indicated that EDNOS groups who met all diagnostic criteria for AN except for amenorrhea did not differ significantly from full syndrome cases.” (Jennifer Thomas is an assistant Professor of Psychology at Harvard.)

In another of her studies (which is about the criteria in the DSM-IV “refusal to maintain body weight at or above a minimally normal weight for age and height e.g. weight loss leading to maintenance of body weight less than 85% of that expected”), she writes

“Although the 85% weight cut-off is intended to represent a ‘suggested guideline’ for diagnosis (APA, 2000, p. 584), investigators who enroll eating disorder patients in clinical trials (Dare et al. 2001; Powers et al. 2002) and insurance companies that determine treatment eligibility typically adhere to this percentage when assessing underweight. The 85% criterion is also frequently used to calculate AN prevalence in epidemiological studies (Walters & Kendler, 1995; Garfinkelet al. 1996), which inform the perceived public health significance of the disorder. The widespread use of the 85% criterion probably reflects a desire to standardize diagnosis across diverse settings.”

She also states;

“Data from clinical and non-clinical samples suggest that eating disorder not otherwise specified (EDNOS) is the most prevalent of DSM-IV eating disorders, and individuals who meet all criteria for AN except the weight cut-off represent a common subtype of this group (Watson & Andersen, 2003; McIntosh et al. 2004). A computer simulation of 193 eating-disorder treatment seekers indicated that the prevalence of AN would increase significantly if the weight criterion were relaxed from 85% to 90% of EBW (Thaw et al. 2001). It is therefore likely that if some clinics use more lenient methods of calculating EBW, they will diagnose a greater proportion of their patients with AN and a relatively smaller proportion of patients with EDNOS, even if they consistently apply an 85% cut-off.”

Jennifer Thomas also makes an important point regarding diagnosis and treatment regarding weight cut off points:

“The finding that investigators use different weight criteria for AN has important implications for eating disorder diagnosis, treatment, research and insurance reimbursement. Our results raise the possibility that a patient of a particular height, weight and symptom profile could receive a diagnosis of AN at one treatment center and a diagnosis of BN or EDNOS at another, and be eligible for one investigator’s AN treatment outcome study but not another. On average, discrepancies are possible within a 15-lb weight range for females and a 25-lb weight range for males, and could occur even if the assessing clinicians at each treatment center referred to the same DSM-IV criteria to assign diagnoses. If each clinician then attempted to recommend an evidence-based treatment, the patient diagnosed by the stricter weight cut-off and therefore classified as BN or EDNOS might receive out-patient therapy whereas the patient diagnosed by the more lenient weight cut-off and therefore classified as AN might receive a more intensive intervention (e.g. in-patient care) because of the perception that he or she is more underweight.”

She also made the following comment on a post by Science of Eating Disorders (‘Are There Any Meaningful Differences Between Subthreshold and Full Syndrome Anorexia Nervosa?’):

“I share your frustration with the 85% EBW guideline — it’s not only arbitrary but inconsistently applied (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847836/). Interestingly, the DSM-IV Work Group never meant it to be a “cut-off” (just a guideline), so it’s a good thing it’s being omitted from DSM-5. My work also suggests that EDNOS is typically just as severe as AN and BN (http://www.ncbi.nlm.nih.gov/pubmed/19379023), and clinically I think too many patients find their suffering invalidated when they are diagnosed not with a specific eating disorder, but an acronym. I also agree with you that DSM-5 represents a big improvement (especially the inclusion of named subtypes like purging disorder)…”

The post by Science of Eating Disorders (which is linked above) talks about a study conducted by Daniel Le Grange and colleagues, published in the European Eating Disorders Review, where they compared eating-related and psychopathology measures between 59 anorexia nervosa and 59 subthreshold anorexia nervosa women, and found that there were no differences between the two other than the bingeing and purging frequency, which was higher in the AN group, and body checking behaviours, which was higher in the EDNOS-AN group. They said:

“There is little evidence that participants with EDNOS-AN were any different from those with AN. Therefore, our results confirm the now accepted notion that menstrual status is probably not a helpful diagnostic marker for AN (Attia, Robero, & Steinglass, 2008) and also challenge the generally accepted cut point of 85% of ideal body weight (or BMI 17.5 ) for a diagnosis of AN.”

We know that the weight threshold that is used so rigidly by some can cause massive problems for those seeking treatment: many insurance companies and inpatient facilities will only accept those meeting the “anorexic BMI” criteria – even though the specific weight criteria has been removed with the publication of the DSM-V. We also know that the DSM-V is to be used as a guide, and that the “anorexic BMI” is also a guide, not an absolute. There is no weight that you MUST be to be diagnosed with anorexia nervosa.

What I’ve seen from observing both the reactions from some who have suffered from eating disorders (specifically those who have, or are in recovery from, anorexia nervosa) and doctors in response to the idea that you don’t have to meet the weight criteria (that actually doesn’t exist any more in the DSM-V) of 17.5 to be diagnosed with anorexia nervosa, it is those with anorexia that tend to become outraged when it is suggested, whereas all different doctors have different opinions, many leaning towards using the manual as a guideline. Medical professionals that I have spoken to recently do not believe in weight criteria rigidity being exceedingly important to the diagnosis of Anorexia Nervosa. I recently spoke to a doctor in the UK, and a medical director in the US. Both told me that the DSM-V (and the ICD-10) are guidelines, and are to be used as such. When asked about anorexia, EDNOS, and the weight criteria, the US medical director said it is subjective:

“DSM criteria are not absolute, like many things in medicine with variable presentations, symptoms, and severities. The diagnostic criteria are best used as a guide. Unfortunately some take it too literally (many payors, insurances, etc) will not cover care unless strictly adherent to these criteria. I believe the key is to recognize and anticipate before the process progresses to a unstable or potential irreversible condition…Following strict criteria in my opinion results in delayed therapy of patients in worse conditions.”

In the DSM-V, it states:

“Criterion A requires that the individual’s weight be significantly low (i.e., less than minimally normal or, for children and adolescents, less than that minimally expected).Weight assessment can be challenging because normal weight range differs among individuals, and different thresholds have been published defining thinness or underweight status. Body mass index (BMI; calculated as weight in kilograms/height in meters2) is a useful measure to assess body weight for height. For adults, a BMI of 18.5 kg/m2 has been employed by the Centers for Disease Control and Prevention (CDC) (Centers for Disease Control and Prevention 2011) and the World Health Organization (WHO) (World Health Organization 1995) as the lower limit of normal body weight. Therefore, most adults with a BMI greater than or equal to 18.5 kg/m2 would not be considered to have a significantly low body weight. On the other hand, a BMI of lower than 17.0 kg/m2 has been considered by the WHO to indicate moderate or severe thinness (World Health Organization 1995); therefore, an individual with a BMI less than 17.0 kg/m2 would likely be considered to have a significantly low weight. An adult with a BMI between 17.0 and 18.5 kg/m2, or even above 18.5 kg/m2, might be considered to have a significantly low weight if clinical history or other physiological information supports this judgment. For children and adolescents, determining a BMI-for-age percentile is useful (see, e.g., the CDC BMI percentile calculator for children and teenagers). As for adults, it is not possible to provide definitive standards for judging whether a child’s or an adolescent’s weight is significantly low, and variations in developmental trajectories among youth limit the utility of simple numerical guidelines. The CDC has used a BMI-for-age below the 5th percentile as suggesting  underweight; however, children and adolescents with a BMI above this benchmark may be judged to be significantly underweight in light of failure to maintain their expected growth trajectory. In summary, in determining whether Criterion A is met, the clinician should consider available numerical guidelines, as well as the individual’s body build, weight history, and any physiological disturbances.”

This means that people need to be treated on an individual basis, and not strictly by a weight criteria.

What I find worrying is that some (emphasis on some) of those with the diagnosis of Anorexia Nervosa feel that the criteria should be rigid: so much so that they actually believe that it is. I would suggest that this is because some can see it as a badge of honour that you only “deserve” when you reach a certain weight. Those with such black and white thinking regarding AN are particularly (and disorderedly) protective of the diagnosis. This only reinforces to those diagnosed with EDNOS that they are “not sick enough” until they have “achieved” that particular BMI. It also reinforces the (untrue) notion that you can only be diagnosed with AN at a certain weight, and this results in the spreading of misinformation.  It is important that we are educated about the facts, rather than going purely on beliefs when we are not medical professionals ourselves. The negative emotional connection some of those with Anorexia Nervosa seem to have to the diagnosis and the “badge of honour” mentality can cloud judgement and rational thought, and become an issue as it invalidates others.

Obviously in no way is this article intended to invalidate those with EDNOS. In fact, I hope to validate the diagnosis more as those with EDNOS routinely present with symptoms and behaviours that are as serious as AN or BN. My aim was to show that there is barely any difference between those with Atypical Anorexia Nervosa and those with Anorexia Nervosa, and it is my opinion that they should all be diagnosed with the same illness, and any difference in physical symptoms be treated accordingly. Any doctor or professional who is worth their salt will pay attention to the mental and physical condition their patient is in and diagnose that way, or if they have been diagnosed before, they will reassess and treat accordingly. Using the guidelines as absolutes can be extremely harmful, misguided, and unhelpful, and spreading the notion that they are absolutes within the eating disorder community on social media and within our culture in general, is harmful to those seeking help, support, and treatment.

Men Get Eating Disorders Too

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Eating disorders are stereotypically seen as an illness that young, white, females develop. Whilst this is obviously an outdated myth and anyone of all ages, genders, and races can experiencing eating disorders, there are still a huge amount of people ignorant to the fact that many men suffer from eating disorders too and it is just as serious when men suffer from them as when women do.

Studies suggest that eating disorders are on the rise in men. However, it is also theorised that this may be because eating disorders in men are becoming less stigmatised and more men are coming forward and seeking help and treatment for their illness. Out of those with eating disorders, it is reported around 10% of sufferers are male, although again, these statistics are unreliable due to the fact that so many men do not come forward for treatment, and a recent study on a large university campus found that the female-to-male ratio of positive screens for eating disorder symptoms was 3-to-1 (Eisenburg, Nicklett, Roeder, & Kirz, 2011). As it says on the website MGEDT:

“Conflicting and poor quality data is one of the biggest problems in pinning down the full extent of eating disorders in the UK and indeed the world. According to Beat information from the Department of Health only shows how many individuals received inpatient treatment. This only captures only a very small percentage of cases, since as much as 50 per cent of treatment is provided by private clinics and only the most severely ill will receive inpatient care.”

Through large scale surveys it was found that in the past thirty years, male body image concerns have increased severely, with 15% to 43% of men being dissatisfied with their bodies; rates that are comparable to those found in women (Garner, 1997; Goldfield, Blouin, & Woodside, 2006; Schooler & Ward, 2006). In adolescent and college samples, between 28% and 68% of males of normal weights saw themselves as underweight and reported that they had a desire to increase their muscle mass through dieting and strength training (McCabe & Ricciardelli, 2004; McCreary & Sadava, 2001).  (Statistics and sources taken from the NEDA site)

So why do boys and men get eating disorders? Just like with girls and women, the reasons are vast and complex. Bullying, abuse, dieting, feeling pressured whilst engaging in sport, having a career that demands thinness (such as modelling or acting), and diet culture can all be a catalyst in the develop of an eating disorder in men (and these are just a tiny selection of the things that can trigger an eating disorder). It is also shown that the media is having an effect too, and that exposure to male body ideals are causing men to compare themselves to these ideals and this is positively correlated with the drive for muscularity in men. The fact that we are living in a society that still places importance on gender roles and traditional masculine ideals means that males have negative attitudes towards seeking psychological help. In addition to that, we are not identifying eating disorders in boys and men:

“Doctors are reportedly less likely to make a diagnosis of eating disorders in males than females. Other adults who work with young people and parents also may be less likely to suspect an eating disorder in boys, thereby delaying detection and treatment. A study of 135 males hospitalized with an eating disorder noted that the males with bulimia felt ashamed of having a stereotypically “female” disorder, which might explain their delay in seeking treatment. Binge eating disorder may go unrecognized in males because an overeating male is less likely to provoke attention than an overeating female.  This inferior image, among other things, contributes to the reality that 1 in 10 cases of eating disorders involve males. Particularly, for the disorder anorexia, up to one in four children referred to an eating disorders professional is a boy.” (ANAD)

Even though the stigma may be dissipating, it’s still there, as illustrated by the experiences I have been hearing about. One male wrote to my blog to tell me that his doctor told him he could not have anorexia because he could not experience amenorrhoea as he had no menstrual cycle to lose. Another man told me his doctor thrust a leaflet about eating disorders into his hands and offered no other information or support. It is extremely worrying to hear that even professionals are dealing with males with eating disorders in a way that is so dismissive and also shockingly ill-informed.

Men also find it extremely hard to talk to other people about it, because of the sense of shame they may experience in relation to having an eating disorder, and again, this is down to stigma in our society. They are afraid of being judged, and they are afraid of the negative reactions of friends who might laugh it off and dismiss it or make fun of them for suffering from an eating disorder, because it is still to some extent seen as a “girl’s illness”.

Eating disorders can also be harder to spot in some men because it is more likely for women to have dramatic weightloss, whereas in men their eating disorders can expressed through “bulking up” and hitting the gym, which is not seen as particularly suspect in a society so keen on advocating exercise and showing male body “ideals”. as lean and muscular.  It is important to note that if an individual is taking performance-enhancing supplements in their attempt to become more muscular and then engages in weight lifting, they are at increased risk of suffering a heart attack or stroke.

It is of paramount importance that we recognise eating disorders in boys and men as much as we recognise them in girls and women. It is of paramount importance that we start treating them just as seriously and it is of paramount importance that we continue to reduce the stigma surrounding males and eating disorders so that those suffering will come forward for help and support, from their doctors, from their friends, and from their families.

The Portrayal of Anorexia Nervosa in the Media (and the General Lack of Representation of Any Other Eating Disorder)

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There was a time, a couple of years ago, when I expressed interest in a photoshoot that was going to show people of various shapes and sizes in bikinis or “tasteful white underwear”, to accompany an article on the recovery of eating disorders. As a B-eat media contact, I receive emails about research projects, articles, and surveys to do with eating disorders that I could possibly help out with, which is when I stumbled across this article and the request for those who had recovered or were in recovery to contact the journalist who was to be writing the article.

I expressed my interest, and the journalist and freelance writer who was to write the article responded. She explained that the aim of the article was to have a positive and influential impact on the way eating disorders are viewed in the UK. She wanted to eradicate the myth that a full recovery isn’t possible, and also to present a healthy image of women’s bodies. She expressed that she was aware that the media usually sensationalises eating disorders, and portrays the subject is a very negative light, without ever looking at the recovery journey and people who have achieved remission. She wanted the article to inspire those in the grips of an eating disorder. To me this sounded like an excellent idea until I read with unease that my present weight and clothes size was expected to be included in the article, as was a “before” and “after” photograph.  It stated within the email that she was not looking for a shocking image, but if that was the case, why on earth was there any need for a “before” photograph at all, showing me when I was sick?

If the intent was to raise awareness for non-disordered people, and inspiration for those who have an eating disorder, then a photograph of someone when they are sick would not be beneficial in any way. Disordered people would only be triggered by such images and most likely put off by the weight gain that they see between the before and after photographs (a comparison between the two would be inevitable), and raising awareness means showing a variety of eating disorders: bulimia, EDNOS (Eating Disorder Not Otherwise Specified), and BED (Binge Eating Disorder), as well as anorexia. People who suffer from eating disorders that are not anorexia tend to be of a normal or above normal weight, and therefore a “before” photograph would not illustrate their sickness. Eating disorders are mental illnesses, and therefore the problem lies predominantly within the mind, not exclusively within the body. A photoshoot portraying people who are recovered in bikinis or underwear would be positive because it would show those in remission being proud of their bodies instead of feeling ashamed and hiding them, the focus should not be on what clothes size or weight they are now. Giving that number significance just defies the point of recovery and draws attention to what these people have been fighting so hard to get rid of: the destructive obsession with attaching such an importance to a number. Why would that number even be given a mention in an article about recovery?

I replied to the journalist, stating my thoughts on the matter, but she never sent me an email back to answer my questions about it all.

The media need to stop printing photographs of these extremely underweight girls day in and day out. Not only does the frequent publishing of photographs of anorexic individuals numb the viewer, but there is a high risk that it will trigger people with eating disorders to push themselves further into the disease, and hinder those who are trying to recover by possibly sparking a relapse. This could also cause the same for those who are recovered, because being recovered does not mean being cured. One of the eating disorder’s most powerful weapons is its little mantra: you’re not sick enough, and so when faced with images of the worst cases of anorexia, those with eating disorders more than likely have that voice whispering persuasively into their ear. Photographs of anorexics at their lowest weight benefit nobody. Ever.  At the end of the day the use of these images of very underweight people are there to satisfy the curiosity of the viewer, and not for any beneficial reason for those afflicted with the disease.

Notice that I said “girls” in the paragraph above. The prevalence of eating disorders in men is becoming more and more significant, but articles about men with eating disorders are extremely rare, which furthers the stigma surrounding it and invalidates the many men suffering from the illness. We need to start representing the male population who suffer with eating disorders. It is so important that they get recognition and acceptance, so that more men feel able to ask for help and support which they desperately need.

Another negative to these images is that because anorexia nervosa is the eating disorder most visible to the eye, the media focuses almost entirely on that eating disorder only so that they can publish disturbing images alongside the articles to shock the viewer and satisfy their morbid curiosity. This results in the media neglecting to give equal coverage to bulimia nervosa, BED, and EDNOS, not to mention ortherexia nervosa* and ARFID, which most people have not even heard of, and anorexia athletica. Our society seems eager to gawp at people who are physically different in some way to most others; whether they are exceedingly thin, extremely overweight, showing severe symptoms of illness, deformed, or disabled. Some examples of this are the programs Supersize Vs Superskinny, The Undateables, and Embarrassing Bodies. We are overly intrigued to see those deemed physically unattractive try (and often fail) to lead a normal life, but that has got to stop when it effects those in similar situations in a harmful way, which is exactly what the publication of these types of images does. We are so obsessed with staring at those different to us that it becomes the main focus of articles on eating disorders, and so all the other eating disorders get barely any coverage, which is extremely invalidating and perpetuates the myth that anorexia is the only “serious” eating disorder. All eating disorders are life-threatening and soul-destroying, and it is so important that people receive that message loud and clear.

Because the media focuses chiefly on those with severe anorexia nervosa and ignores the existence of other eating disorders, this only enhances the misconception that eating disorders are about weight, and that people who are not severely underweight cannot suffer from an eating disorder. Eating disorders are judged far too frequently by appearance, and people that are of a normal weight or above normal weight are not taken seriously enough by friends, family, and even doctors. The media only panders to that incorrect judgement.

People need to realise that eating disorders are exceptionally harrowing, extremely serious, and utterly destructive mental illnesses, and not some kind of sick pastime in the form of some “light reading” in a glossy magazine.

We are people, and we are suffering: stop parading us around for the entertainment of others.

*Ortherexia nervosa is not mentioned in the Diagnostic and Statistical Manual of Mental Disorders (DSM) but was first used by Steven Bratman to characterize people who develop an obsession with avoiding foods perceived to be unhealthy. This is something a vast majority of people in recovery from an eating disorder experience a phase of, but it is also very much experienced as a stand-alone mental disorder and should be taken very seriously, as it can result in malnutrition and even death.